Reclast side effects

ikhender, I hope this message gets to you. I'm replying to myself because I don't know how to reach someone if there is no recent post from them. In one of your posts, I think it was in September, you sent an article from the publication "Cureus" entitled "A Rare Presentation of Zoledronate-Induced Systemic Inflammatory Response." It's an excellent article about an 82 year old that had severe side effects from Reclast. I made a copy of the article, and refer back to it often. I tried to find your post that had the link with it, but couldn't find it. I wonder if you could post it again. I want everyone to see how the doctors helped this woman, and all the tests that are available to determine if the side effects are from the Relast. Several people seem to think that doctors cannot come up with a definitive diagnosis. The tools are there. Just have to find a doctor willing to use them.

I think I found the article through Google.
https://www.cureus.com/articles/165206#!/
https://www.bing.com/ck/a?!&&p=b0cfa900a44de319JmltdHM9MTcyOTY0MTYwMCZpZ3VpZD0xNmFhZGYwNC0wZjViLTZiMjMtMzk1NS1jYzcwMGUyNTZhZjMmaW5zaWQ9NTE5OQ&ptn=3&ver=2&hsh=3&fclid=16aadf04-0f5b-6b23-3955-cc700e256af3&psq=A+Rare+Presentation+of+Zoledronate-Induced+Systemic+Inflammatory+Response.&u=a1aHR0cHM6Ly93d3cuY3VyZXVzLmNvbS9hcnRpY2xlcy8xNjUyMDYjIS8&ntb=1

Thanks Norma, That is it!! I couldn't get it to print, but will try again when I have more time. Thanks again.

The article mentions only two cases of this inflammatory reaction. I am not sure that a connection to zoledronic acid was proven. A raised sedimentation rate could mean all kind of things. Her sister had rheumatoid arthritis and the patient had a positive ANA which means autoimmunity was already present.

That said, I have lupus and high antibodies for scleroderma and am experiencing severe pain and facial numbness especially related to the auditory nerve, which is somehow affecting the trigeminal and occipital nerves. There are several possible reasons for this. My rheumatologist just answered that it is a rare possibility that the inflamed nerves are autoimmune. My neuro is testing for an autoimmune reaction to metastasis of my previous cancer (I am not yet diagnosed as stage 4 but this would be a clue) and I am having imaging for acoustic neuroma, neck stenosis and other issues. Is it the Reclast? How the heck will I ever know. The woman in the article couldn't be sure either.

And again, the article mentions only two such cases. I would surmise that preexisting autoimmune disorders might result in inflammation over a longer term after Reclast, well past the acute phase reaction. Response to steroids would argue that was the case, Unfortunately I cannot take steroids due to afib.

I would not want people who are reading this forum to be scared by that article. Rare case and dependent most likely on preexisting issues. If you have an autoimmune disorder, talk to your rheumatologist first.

@dingus I have posted about my own side effects. I forget if you are new to this forum but I have struggled with meds for 18 years. That doesn't mean that others will. I think that article is both useful and scary if a reader does not have context.

ps I meant talk to a rheumatologist before doing Reclast.. there is info out there that it can cause inflammatory reactions for people (like me) with autoimmune disorders

It was suggested that I have this Reclast infusion back on July 17, 2024. Within a week I developed this awful pain in both shoulder, right arm, left foot and bladder area. I felt like I was having some kind of inflammation that just came to surface for no apparent reason. Well, filling out a medical questionnaire for the local Physical Therapist and listing the Reclast infusion, I looked up the side effects and lone and behold….muscle and joint pain are potential side effects. The more I use the joints the worse the pain; except the bladder issue; a side effect from having a Urolift installed and then removed all that they could without removing the prostate. I do have a follow up on the 6th of November and the way I am feeling, I’ll never receive another infusion! I’m sure that there are different side effects for different people but I’ve experienced enough to convince myself that this is not for me.

@dannyandebbie Sorry for your pain. Hopefully it will fade away and quickly. That could happen. A good physical therapist could help. And you have a long period before you have to decide on whether to ever use Reclast again. Time to consider those problems and whether you believe they came from the Reclast.

I want to ask a separate question. I have seriously considered the Urolift procedure and finally decided not to. The turning point was when I asked what if I'm one of that supposedly small percentage of guys that has pain from the Urolift and needs to have it removed. The doc said, oh no problem we can do a procedure where we remove the prostate tissue and the Urolift. Well that's exactly why I wanted the Urolift, so that I did not have to have the prostate tissue cut out or lasered out or melted or frozen out. I could never find any more info on this removing a Urolift problem. Could you tell me why you had to have it removed and then what they had to do to get the Urolift out and whether that left you in pain after all that?

@awfultruth I had a procedure called aquablation - have you been given that option?

I had the UROLIFT placed to help with urination; did not seem to help and I developed this awful burning sensation any time I urinated; would give me cold chills. So, urologist removed all that they could without touching the prostate. The four clips remain on back side of prostate and I continue to have that burning sensation anytime I urinate. I was told that some people the burning sensation goes away and some it doesn’t, guess I’m one! I do know that the clips can be removed but there is not a 100% assurance that the burning sensation will go away. In addition, on an intimate level, removing any of the prostate would give you a premature ejaculation; causing the seman to travel to the bladder and there would be no more “ Happy moment” if you will and so I chose to leave things as they are and never would of had the Urolift if I knew I was going to have this constant burning. The Urolift might not be the culprit; hitting a nerve just right could be the issue and no guarantee that nerve will go back to normal.

No! Not sure what it is, will have to look it up, but for now I’ll try to rid myself of this awful shoulder and arm pain. I actually have not seen the endocrinology dept until the 7th of November.